As others have said I find Night Nurse can be useful to help with sleep, but was a bit concerned about taking paracetamol when I didn't need that. So I looked up the data on Night Nurse and found that the sedative effect is due to the promethazine in it - which is an antihistamine which you can buy as an over the counter medicine in the UK. So maybe that's an idea?
Norberte, I agree the taste of the Bach Night Rescue is minging but I spray it before taking the Tamoxifen with water and lose the taste that way. My sleep pattern was all over the place but its the best its been for ages. Incidentally, when I bought it at Boots, the Sales Assistant told me she's had lots of people raving about it!
What's the Zopiclone thing? As a lifetime insomniac I thought I'd tried everything. But then just googled it - short term only and no alcohol - not much good to me. I'm currently waiting on OH falling asleep on couch so I can have the rest of the bottle of wine to myself!
Wishing you all much sleep tonight.
Chamomile tea makes me go for a wee, so is contra-indicated as far as I'm concerned!
Bring on the hard stuff!
Pink Panther xx
I've just been chuckling at what a bunch of shameless junkies we are 😄
Someone suggested Chamomile tea - I nearly fell off my sofa laughing. That's like when you're in agony and the hospital say "oh heres some paracetamol" = last time I was told that I had bowel contractions and had been in real agonising pain with it, I said "why dont you just waft some burning sage leaves under my nose" - my OH laughed his head off at me saying that. I got codeine.
Crikey, with all this substance abuse going on, it's just as well we are all anonymous!
Inspector Clouseau xx
Noreberte, that's more like it!!!! I knew you were hiding something... I should be a detective like in one of the crappy books I read that send me to sleep!
Inspector Clouseau watch out!
I have to admit to having to resort to some prescription meds on occasion when I just couldnt' take any more lack of sleep.
I used either Codeine leftover from surgery and some SEs - that worked very very well.
Or Zopiclone I had left over from the period of waiting for results, they only gave me 14 of them - ha ha. Ahem.
I didn't do it often at all - but they are a godsend if you just need 1 nights sleep!!
Going by my experience don't take Zopiclone consecutively for more than a few days. It stops working and becomes addictive really quickly, I had to go "cold turkey" after only a week on the stuff.
Has anyone else noticed that the better the book, the more quickly you feel sleepy? Of course then you fight to stay awake to read more....
Thanks RR, I think I will treat myself to one the next time I'm over there (can't beleive I think this is a treat but there you are!)
Yes it is, I bought mine from Amazon which is more expensive. I didn't buy them both at the same time, so paid about £27 each. If you buy two at the same time it is £45, so £20 each is good.
Regarding the power surges, I tried the chillo, not bad, but now have a powerful fan attached to wall with a remote control so I don't need to do anything other than find remote under pillow. Darling OH is not too chuffed with this, however. But as he could sleep on a knife edge I care not a jot.
I've tried the 'not reading' thing but just lie there for hours, then pick up book, read 2 pages and that often works.
Thanks for sharing all your experiences, enlightening to say the least!
Choccie, like you I read before I go to sleep, never more than a few pages and then I am out like a light. Interestingly, the CSC (Cancer Survivor’s Companion) says this is something we shouldn’t do in case we associate the bed with reading rather than sleeping but I don’t think I do this, so will carry on.
Norberte, Night Nurse seems a bit tame for you, I was expecting something more extreme!
Mojogirl, I like the sound of Bach Rescue Remedy Night Spray, I think I am going to give this a try as I want to try to avoid prescription meds if I can and if that doesn’t work will try the sominex that Jaclyn has suggested.
Zeppa, sounds like you had a really horrible time, I’m glad you now get a good night’s sleep!
The recommendations in the CSC are too long to post on here but this is what they say about sleep patterns which you all may find interesting:
Normal adult sleep patterns go like this:
1.A fairly rapid transition from being awake to falling asleep
2.A quick transition into deep sleep
3.The longest and deepest part of the sleep cycle. This lasts approximately four hours. Sleep experts say that you get the biggest benefit from these early, deep sleep episodes
4.The rest of the sleep cycle: peaks and troughs between deep and lighter sleep episodes (you can say that again!) until you wake up
Experts say you don’t need to catch up on all the sleep you’ve lost, if you’ve had a bad night. Just getting an initial period of good quality deep sleep – at the start of the night – is enough (so why don’t I feel OK?). Not everyone needs 8 hrs sleep.
I found the brief overview of sleep disruption in the BCC pack OK but I found the CSC more helpful as I was looking for some in depth strategies to overcome this.
I have two chillows. So when I wake up at 2am I swap them over. The coolness of the new one helps me to get back to sleep. And I swap them again at 5am.
well I'm pleased to say I have had 2 good nights of sleep but with the aid of zopliclone which the doc gave me on Tuesday. Tuesday night I slept from before 9pm till 4.50am and last night it was 10.30pm till 4.30am, I know it only happenend because of the pills but I was exhausted and needed something. Tonight I am going to try without them and only use them when really needed but I don't know if that is a good idea or do I take them every night for a week at a time ?? Trial and error but I can't see my doc putting them on repeat prescription for me either
Hope everyone is well as can be
Hi ladies, like u all and a year after treatment I am unable to sleep for more than a couple of hours at a time. This week I gave in and went to boots and bought sominex ( a night time sleep aid!) and....it works, I have taken it two nights running and apart from needing the loo at 3am, have managed to sleep. I did feel a bit slow first thing, so would recommend not driving to early in the morning but other than that....wow....forgotten how it feels to sleep properly. Good luck in your search for sleep xx
I shouldn't think my experience will cheer anyone up, but it may be interesting.
After starting Tamoxifen I couldn't sleep. The radiologists told me to work in the middle of the night (I am a freelance translator), but I was wide awake at midnight and found the idea depressing. I also got hugely swollen legs after chemo, was told to lie down with them raised (never helped, but the swelling went away after a year), and when I did that I would go to sleep. It was really interfering with my work, to say nothing else. The oncologist sent me to the sleep laboratory and I have now been sleeping with a CPAP device (with mask) for two years. Sleep is excellent.
However, I doubt anyone else is in my case. I have sleep apnoea - have always snowed (but slept OK), and I put on a lot of weight after chemo and under Tamoxifen - just after taking off a lot through diet and exercise. So I am hoping to lose weight again and maybe come off the CPAP.
I'm with you. Since being diagnosed my sleep pattern has gone right out of the window. So annoying!!!
No sorry it's a pack which comes as a folder so not available
as a PDF
Hi all, you can find information about sleep deprivation in the BCC Moving Forward pack. This may be helpful to some people experiencing sleep problems.
Hi, has anyone tried Bach Rescue Remedy Night Spray? I have no trouble getting to sleep but generally wake around 2am with a sweat. Four sprays of this on my tongue and I'm back to sleep and my body feels lovely and relaxed. I mentioned it to my BCN and she said it was a no-no because it contains St. Johns Wort but I have checked the ingredients and the flower essences used are Rock Rose, Impatiens, Clematis, Star of Bethlehem, Cherry Plum and White Chestnut, no mention of St. Johns Wort. It really works for me. I have always been a fan of the ordinary Rescue Remedy too, used it before interviews, before my op etc.
Worth a try, maybe?
Another chronic insomniac. I think I was 14 at my first visit to GP to complain.
I'm on amytriptyline at the moment, trying to reduce dose as it makes me crave cake.
But Nytol (not the herbal) also works for me. Never sure what to say to chemist who tells me short-term use only. Yeah yeah...just give me the pills. Just another antihistamine though. Phenergan is another that worked, but just try getting that from some chemists - I wondered why they made me feel like I'm asking for illegal drug - turns out some mothers give it to children to make them sleep. Tsk.
And unfortunately I live with a chronic dozy-head. I'm sure he got my allowance. I find if I can sleep I can handle most things, if I can't I find life very difficult altogether.
Good luck with whatever is your substance of choice.
I have been an insomniac most of my life. It is just a bit worse now since BC. I have had temazepam on prescription for years but I use them very sparingly - ie in desperate circumstances. In a way just knowing I have them helps. I get a pack of 24 at a time and that usually does me for about 3 months. I managed to convince my GP that I can use them in a sensible manner. They are good for not making you feel zombie like next morning.
I have a little portable DVD player with earphones and I often watch DVD's in the middle of the night. It helps to relax my busy head and nearly always makes me feel sleepy eventually. It's a bit like how you can fall asleep in front of the telly but can't sleep in bed.
I have done the alcohol thing and the hay fever meds too in the past but not for a while.
Finally the thing that is most natural in getting me to sleep is sheer exhaustion. That's not pleasant though because to get to that point is a bit hellish - a couple of bad nights previously and the strain of not letting yourself drop off any time during the day or evening before bedtime.
For me it is a great achievement on those rare mornings when I wake up after a decent sleep if didn't do anything or take anything the night before. I have always been so envious of those people who put their heads on a pillow and go to sleep immediately. And they just don't appreciate what they can do.
Got some sleep last night eventually. Not to be recommended as I was actually unconscious rather than asleep. A large bottle of wine did it for me last night. But then alcohol gives you cancer, ha ha!!! And the hangover the following morning isn't conducive to any sort of productive day, so not an insomnia cure I'd suggest as anything other than occasional.
Did I hear hypnotherapy can do the trick? I find myself either reading some book or other (doesn't need to be a deep and meaningful book, I usually can't remember what I read the next morning anyhow) or playing sudoku on my phone. Something mindless and pointless to keep my mind busy rather than anything useful, practical or productive.
Hi everyone, and sorry for those of you who were awake at 4am!
Amazingly, I had and OK night’s sleep, is this a case of a problem shared is a problem halved? 🙂 I even had a dream about Will Smith?!
I am off to the acupuncturist this morning but will update on the book later, it did make some interesting comments!
Zopiclone is the only thing that seems to work for me but I only take 3 days max at a time but now the GP won't prescribe it and has given me Temazopan instead which as you can see doesn't work at all. Might be worth asking for temazopan to see if it works for you?
well here I am joining the all night club! not sure what the answers are either. I have been taking zopiclone for 5 years,not originally related to bc ,Personally for me they worked wonderfully for 3/4years.My docs say not addictive as such but like any drug the body does build up a tolerance to them and some find they need 2 to do the job that 1 used to do. In my case when tolerance started to build I changed to another type for month or so then changed back and all worked well,this last month or so tho sleep eludes me like most here 2/3hrs at most then wide awake-not so good huh.But as general thing I found them wonderful -no morning drowsiness just full nights sleep.I know all this stuff is a trade off so its a personal choice which way we go.Trial and error i guess but when they work well they are a godsend. Sweet dreams to us .....if poss.
Some say prition they use it in chemo ward but iv very gd my onc sd use it but maybe only once I get cold sweats no hot they r hell
Another insomniac member of the 2am club here.
Like some others I could sleep for England whilst on chemo etc but since finishing treatment am suffering sweats and sleeplessness and I haven't even started tamoxifen yet. Had Zoplicone to help me sleep during chemo and it really helped but doc was worried about prescribing it for long. Didn't have any problem coming off it either just gradually halved and then quartered the tablet over a week or so.
Lovely rad burn also contributing to night discomfort at the mo too.
Will be another willing guinea pig for any sleeping tips.
Nite nite girls.
I must admit that I've occasionally resorted to using some of the Tramadol I've got left over after surgery to ensure a good night's sleep from time to time. Not a great idea but sometimes I'm so desperate for sleep.
can i join your gang?? Im a year post treatment and still struggling with sleep. im back at work and working shifts, which makes it EVEN worse. I have to confess to using night nurse as my sleeping aid although it only works for a couple of nites in a row..when i need a really good sleep i use sleepeze but feel a bit of a zombie in the morning (not good in my line of work!
sleep deprivation is an awful thing to suffer with because it effects every aspect of your life - hopefully between us all we can find a cure!!!!
Hi again DaisyGirl
My oncologist recommended Zopiclone but my GP was not keen, she said it rapidly becomes addictive. So I tried it anyway, and wow my GP was right! I had one night of excellent sleep, thought whoopee a cure at last, then the next night didn't sleep quite as well and after that was waking at 2am with absolutely no chance of getting back to sleep for hours. Apparently this "rebound insomnia", as it's called, is typical of Zopiclone and the related family of "Z" type sleeping pills. Not only that but I then had to wean myself off these pills, and I'd only been on them for 7 days! Even more sleepless nights! Don't touch this stuff - horrible, classic case of the cure being worse than the original problem.
And by the way, Amitriptyline is excellent for nerve pain. The reason it's not used for depression these days is that it has a sedative effect and numbs the nerve endings - which makes it perfect for some of us BC sufferers.
Hi EB, RM & SB, welcome to the Zzzzzzzzzzzz Gang (although may also double up as the BC branch of AA by the sound of it!)
Anyone who is lying there at 2am automatically qualifies but any application will be considered on its merits (extent of bad temper, bags under eyes, night sweats etc)
On a serious note, this is obviously a BIG problem, so I offer myself up to investigate and experiment this very debilitating SE and report back my findings. Anecdotal tips are welcome, I will conduct my own trials (unless it involves fish or high places, then sorry but you are on your own!)
EB - I think an IA thread is a great idea, how about the 2am Club? If any of you are awake at 2am, post... lets see how many of us there are! Sleep inducing topics only of course!
I had no trouble sleeping during my treatment, I was always so tired I could sleep 12hrs a day. Since I went back to work last year though I've struggled with sleep and tried just about everything. Night Nurse or Zopiclone are the only things that work for me. Not very healthy I'm afraid so I do try to limit using them until I'm exhausted. Mostly Friday nights when I know I don't have to get up for work next day.
Hi Daisygirl and other sleep deprived ladies.
I haven't tried sleeping tablets yet, but for me, Piriton, with or without alcohol does work. With alcohol is particularly effective but probably not recommended.... I also find it easier to sleep if I've done some exercise, the more energetic the better, but if like me you're knackered after chemo and rads, that isn't always easy.
Can I join in-not that I have any wonderful answers, but good to know there are others awake at the dead of night 😞 Maybe we could have an insomniacs anonymous thread for the wee small hours 🙂
I had some sleep issues before my DX, but since then (Oct 09) its gone into overdrive. I, like most of you, can get to sleep but at least 6 nights a week, get up again anytime between 2-4 hrs later.
Ive tried many remedies,sleeping tablets,tapes, blackout curtains etc etc and just havnt found an answer, so maybe between us, we can solve this awful conundrum!!!
My latest attempt, following advice of my GP, is to take Venlafaxine 300mg per day, as he says that its my low mood which is the problem-I didnt think I had a low mood, but hey ho!.I take my Tamoxifen in the morning and my GP says insomnia is one of the S.E, but thats also one for Venlafaxine too.
The effect has been to make me sleep just the ssme, but I worry about it less!.
Strangely, I used to sleep a bit better when back at my old family home-probably the 'womb' like emotion of being back where I grew up.
Anyway, ladies, hope that you can find some peaceful rest soon.
Like you I'm having trouble getting a good night's sleep. If I stay asleep for three hours at a time I think I'm doing pretty well. If it's not not a hot flush that wakes me it's my bladder- we are told to drink plenty so I do. Like you, when I wake I then can't get back to sleep, sometimes for several hours. Do I get up or stay in bed - that's the question?
The sleeping pills the hospital gave me didn't do a thing(Zopiclone) and I've tried all the usual - valerian, sleepy time tea, camomile tea, warm milk, glass of wine etc without success. Tried the old, go to bed at the same time each night and get up at the same time each morning, and, avoid the granny nap in the afternoon routine without luck either.
Have decided next GP visit to ask for a low dose antidepresant to see if that helps.
So, you are definitely not alone - I'm taking Letrozole not Tamoxifen though. Keep up the investigations and let us know if you find the magic solution.
Can I join your gang?I have had 3 out of 8 chemo so far (4xAC,4XTAX)
Am always tired, have no trouble getting to sleep, but wake up most nights between 2.30-4 a.m. hardly ever get back to sleep, brain kicks in, so does fear, sometimes night sweat too. Usually end up coming downstairs and looking on here!
i have some sleeping tablets, but haven't taken them because don't want to be drowsy in my best time which is usually morning.
Unfortunately can't use my usual preferred drug of choice, alcohol, because it makes me feel sick at the moment - bummer!
Hi Ladies, and thanks for the replies, it is comforting to know I am not the only one struggling with this (but of course also sorry that you are also sleep deprived!).
E K, I think our cats may be related! Henry looks the picture of innocence but is VERY naughty and, like most men (even with his bit chopped off) suffers from selective deafness (i.e. only takes any notice when he wants something). They are selling the "chillow" at the hospital for £20 is this a good price? Already on the alcohol but resisting the sleeping tablets just yet. I do sometimes however, take ibuprofen in the night to help me "relax" and go back to sleep (not the heavy duty stuff with codeine) and this also sometimes helps, but again not always.
Biff - I too take EPO and I think your Doc is very mean, clearly has no problems going to sleep! Re weather, a huge black cloud has just come over, please keep them in Scotland! It is not always good to share!
GIJane - I will post a summary of the books suggestions but it does look like the "usual" advice so far!
CC - I am starting to like the idea of a low dose anti-depressant, I currently take Dixarit, high blood pressure medication that can also help with hot flushes, but I think this might exacerbate the Neuropathy symptoms, so considering asking doc for ADs at review in Sept. I have also been following the Tam threads that suggest that poor sleep/sweats are SEs of certain brands of Tam and may go for a "pincer movement" with the Doc (they hate me) and see what they come up with! (usually the flick!)
I found this was a real problem when I went back to work and couldn't take naps when I needed to make up for lost sleep at night.
I tried natural remedies such as evening primrose oil, then I tried valerian, but neither made much difference. Like most people posting on here I eventually found that a low dose anti-depressant was the "least worst" option and have now settled down to 2 or 3 night sweats most nights, but at least I usually get back to sleep again after 5 minutes cooling off time.
It seems to be trial and error to find which anti-d suits you, I got some weird dreams with one, a very dry mouth with another, and I tried quite a few before I settled on Amitriptyline.
I'm fortunate that I have a very sympathetic GP who was willing to keep trying different things until we found something that suited.
Melatonin sometimes works for me. It's natural but you have to order it online. Non healthy things seem more effective sadly. Piriton. Sleeping tablets. Alcohol. Not all together! I haven't got as far as you though. Does the book sayany more than bed time routine and get up if you can't sleep? If it does, love to know....